Posted on July 27, 2018 at 5:28 PM
New in 25(4) Journal of Law & Medicine (July 2018).
Responding Better to Desperate Parents: Warnings from the Alfie Evans Saga
The end-of-life litigation involving Alfie Evans (9 May 2016 – 28 April 2018) from Liverpool, England, who suffered from an incurable and degenerative neurological condition was extraordinary. It emerged in the shadow of comparable but not as extensive litigation enabled by crowdfunding in relation to Ashya King and Charlie Gard. Although Alfie’s parents lost repeatedly in the High Court, the Court of Appeal and the Supreme Court of England, as well as before the European Court of Human Rights, they persisted in bringing more legal challenges. The public relations campaign on their behalf at times was threatening and accusatory of the clinicians and of Alder Hey Hospital. Both persons employed at the Christian Legal Centre, which represented the parents at times, and medical practitioners from Europe who participated in forensic assessments behaved unethically.
There are many lessons to be learned from the Alfie Evans saga. If we are to maintain morale and commitment among those who provide paediatric clinical services to the very ill and the dying, they must be protected from the public relations and litigation campaigns deployed by those purporting to represent the Alfie Evans family, and better non-adversarial methods need to be constructed as a matter of urgency to resolve matters involving disagreements about the treatment of terminally ill children.
When Is It in a Child’s Best Interests to Withhold or Withdraw Life Sustaining
Treatment? An Evolving Australian Jurisprudence
Decisions about whether to withdraw or withhold life-sustaining medical treatment from children give rise to complex and value-laden judgments. While recourse to the courts is uncommon, judicial decisions provide an important source of guidance for the children (where they can participate), families and health and medical professionals involved in these decisions. Yet, there has been remarkably little consideration of the Australian jurisprudence on this issue.
This article addresses that gap by undertaking the first comprehensive analysis of all publicly available Australian cases that consider whether or not it is in a child’s best interests to receive life-sustaining treatment. A total of 25 cases were located and the judicial consideration of best interests was thematically analysed. Key considerations (to varying degrees) when assessing best interests included the likelihood of treatment curing or improving the child’s health, medical views about diagnosis, prognosis and treatment and the child’s and parents’ views and wishes. The article concludes that the law requires greater certainty and transparency in decision-making. Given the significance of these cases, judgments should describe the factors that the court considers relevant and important, and those that are less influential, as well as the weight ascribed to those various factors and the reasoning that underpins an assessment that treatment is or is not in a child’s best interests.